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Abstract：
OBJECTIVE: Postural Tachycardia Syndrome (PoTS) is a poorly understood syndrome of multiple disabling symptoms. This study explored the process of seeking a diagnosis of PoTS. Analysis focused on changes before and after participants\' first appointment with a national PoTS clinic, and explored whether a diagnosis is beneficial in the context of multiple co-occurring conditions and an absence of licenced treatments.
METHODS: A longitudinal, qualitative study.
METHODS: Participants (n = 15) in this nested qualitative study were recruited from a larger study of people who had been newly referred to a National specialist NHS Cardiology PoTS service. Semi-structured interviews were conducted remotely before, and 6 months after their first appointment with the clinic. Data was analysed longitudinally and inductively using Reflexive Thematic Analysis.
RESULTS: Three overarching themes were identified: \"Slowly moving forward and finding positive gains\", \"Needing more pieces of the puzzle to see the bigger picture\", and \"The value and impact of investigations\". Findings suggested that not much had changed in the 6 months between interviews. Participants were moving forward in terms of diagnoses, treatment and adjustment following their appointment, but many were still seeking further clarity and possible diagnoses. Investigations, appointments, and new-found problems, continued to have a substantial impact over time.
CONCLUSIONS: The journey to diagnosis for patients with suspected PoTS appeared to promote acceptance of self, and of limitations posed by symptoms. However, many participants continued their search for an explanation for every symptom experience, and this may become increasingly complex, the more labels that have been acquired. Lack of clarity contributed to ongoing difficulties for this patient group alongside fraught relations with health care professionals (HCPs). A more coherent, integrated approach which is communicated clearly to patients is recommended.
METHODS: A longitudinal, qualitative study.
METHODS: Participants (n = 15) in this nested qualitative study were recruited from a larger study of people who had been newly referred to a National specialist NHS Cardiology PoTS service. Semi-structured interviews were conducted remotely before, and 6 months after their first appointment with the clinic. Data was analysed longitudinally and inductively using Reflexive Thematic Analysis.
RESULTS: Three overarching themes were identified: \"Slowly moving forward and finding positive gains\", \"Needing more pieces of the puzzle to see the bigger picture\", and \"The value and impact of investigations\". Findings suggested that not much had changed in the 6 months between interviews. Participants were moving forward in terms of diagnoses, treatment and adjustment following their appointment, but many were still seeking further clarity and possible diagnoses. Investigations, appointments, and new-found problems, continued to have a substantial impact over time.
CONCLUSIONS: The journey to diagnosis for patients with suspected PoTS appeared to promote acceptance of self, and of limitations posed by symptoms. However, many participants continued their search for an explanation for every symptom experience, and this may become increasingly complex, the more labels that have been acquired. Lack of clarity contributed to ongoing difficulties for this patient group alongside fraught relations with health care professionals (HCPs). A more coherent, integrated approach which is communicated clearly to patients is recommended.
摘要：
目的：体位性心动过速综合征（PoTS）是一种对多种致残症状知之甚少的综合征。本研究探索了寻求PoTS诊断的过程。分析重点是参与者首次与国家PoTS诊所预约前后的变化，并探讨了在多种共存条件和缺乏许可治疗的情况下诊断是否有益。
方法：纵向，定性研究。
方法：这项嵌套定性研究的参与者（n=15）是从一项更大的研究中招募的，这些研究是新转诊到国家NHS心脏病学POTS服务的人。半结构化访谈以前是远程进行的，在他们第一次预约诊所6个月后。使用自反主题分析对数据进行纵向和归纳分析。
结果：确定了三个总体主题：“缓慢前进并找到积极的收益”，“需要更多的拼图才能看到更大的图景”，和“调查的价值和影响”。研究结果表明，在两次面试之间的6个月中，没有太大变化。参与者在诊断方面正在前进，任命后的治疗和调整，但许多人仍在寻求进一步的明确和可能的诊断.调查,约会,和新发现的问题，随着时间的推移，继续产生重大影响。
结论：疑似PoTS患者的诊断过程似乎促进了对自我的接受，以及症状带来的局限性。然而,许多参与者继续寻找每个症状经历的解释，这可能会变得越来越复杂，获得的标签越多。缺乏明确性导致了该患者群体的持续困难以及与医疗保健专业人员（HCP）的紧张关系。更连贯的，建议采用明确传达给患者的综合方法。
方法：纵向，定性研究。
方法：这项嵌套定性研究的参与者（n=15）是从一项更大的研究中招募的，这些研究是新转诊到国家NHS心脏病学POTS服务的人。半结构化访谈以前是远程进行的，在他们第一次预约诊所6个月后。使用自反主题分析对数据进行纵向和归纳分析。
结果：确定了三个总体主题：“缓慢前进并找到积极的收益”，“需要更多的拼图才能看到更大的图景”，和“调查的价值和影响”。研究结果表明，在两次面试之间的6个月中，没有太大变化。参与者在诊断方面正在前进，任命后的治疗和调整，但许多人仍在寻求进一步的明确和可能的诊断.调查,约会,和新发现的问题，随着时间的推移，继续产生重大影响。
结论：疑似PoTS患者的诊断过程似乎促进了对自我的接受，以及症状带来的局限性。然而,许多参与者继续寻找每个症状经历的解释，这可能会变得越来越复杂，获得的标签越多。缺乏明确性导致了该患者群体的持续困难以及与医疗保健专业人员（HCP）的紧张关系。更连贯的，建议采用明确传达给患者的综合方法。
